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  1. COMMUNITY

    1. Announcements, meetings and other resources

      Including why this site is not for newly diagnosed low-risk men trying to select an initial treatment.

      697
      posts
  2. ADVANCED PROSTATE CANCER FORUMS

    1. Primary hormone therapy

      Early or late, long or short, intermittent or continuous, radiation or not, one or more agents (ADT1, ADT2, ADT3, ...)

      231
      posts
    2. Secondary hormone therapy

      When primary hormone therapy fails, this may be the next step.

      77
      posts
    3. Castrate Resistant Prostate Cancer

      CRPC - Testosterone is at castrate level, but the cancer is again advancing.

      147
      posts
    4. Metastatic

      Evidence is found in bones or soft tissue through imaging or pain.

      299
      posts
    5. Very high risk

      Men with very high risk may need more aggressive treatment than most. What indicates very high risk?

      38
      posts
    6. New agents

      Drugs and other treatments of the future - under trial or newly approved.

      227
      posts
    7. Every little bit helps

      Some drugs given for other conditions have anti-cancer effects.
      Some foods have anti-cancer effects.
      Exercise certainly helps
      An anti-prostate cancer cocktail may be in order.

      151
      posts
    8. Radiation, diagnostic imaging, bones and other prostate cancer topics

      All types of radiotherapy, diagnostic imaging, other diagnostics and anything else on prostate cancer not covered in other forums.
      (If it's not about prostate cancer it should be in The Lounge.)

      296
      posts
    9. Articles on other sites

      These articles are not on JimJimJimJim.com. Click on a link in one of these topics and you will be taken to another site where we have no control over what is posted.

      329
      posts
  3. MEMBER'S STORIES AND NEEDS

    1. My story

      Members tell of their own history.

      569
      posts
    2. Any suggestions?

      What should I ask my doctor about on the next visit?

      183
      posts
    3. The lounge

      Any topic you like goes in here.
      No defamation, please.
      Nothing offensive, please.

      415
      posts
  • Posts

    • Patrick Turner
      I was at follow-up meeting with my local radiation doc and he is leaving Canberra Public to work at Albert in Vic, and so it was shake hand event as I have known him since 2010. Anyway, I mentioned I kept in involved with this group and the HealthUnlocked group to share experiences with many other men and I mentioned to this doc here that one man in a group had a brain met nearly as big as a golf ball, 44mm, and this doc suggested stereotactic RT. But 44mm is a frightening size, are you sure that was the size and not 4.4mm ? I would imagine having enough IMRT to a 44mm sized tumour will affect your personality and general level of coping physically. In other words, there would be side effects that may be permanent. I've had 70Grey to PG for initial treatment then another added 31Grey 6 years later which had only mild effect if any, because I was put on Cosadex at beginning of the IMRT and Psa went from 5.6 to nadir of 0.4 then up again in 6 months, so I can't say the IMRT worked because  if it did, maybe its effect was masked by Cosadex.  The 2nd PsMa scan I had in 2017 showed plenty Pca in PG, but that's reduced with Lu177.  I do not know if Lu177 is able to go to brain or not.  Doctors are eager to keep you alive, but always expect that there may be complications so you'd ideally want to have someone caring about you at this time. We like to be independent for as long as possible, but none of us can be that forever. I don't have any partner or kids, and have gotten used to just sucking up all the bothers in life when they happened without any support from anyone, so when I am forced to admit defeat and surrender, I'll just hold one hand with the other, and hope the public care system gives me enough pain relief. I don't fear being alone, because I've been alone most of my life, and am used to it. I know I am not going to have a huge long future where I don't have to worry about anything like we did at 30, or even 50.   Its beautiful day here, 26C predicted, and I'll get out for a short cycle ride, and have a swim later, lunch at a café,  then tinker in shed, and I don't need companions for any of this, I'll be quite serene and peaceful. Companions would be nice, but the ones of the past left town after some years wheras I stayed put, quite happy to not have to travel anywhere; I seem to cope OK. But we are all different, and some of us feel dreadful during the challenge Pca brings. I've shared house with a number of ppl and none were worry-free, and not all coped well, even without any cancer, but at least a daily or weekly chat was good between the 2 of us, but the reality is that we must cope alone, and afaiac, just accept help when its offered with as positive attitude as possible, so the helpers feel better. I'm darned if I can let myself be a grumpy old man.  Patrick Turner. 
    • alanbarlee
      Correction: Please ignore my reference to darolutamide in my earlier post. This novel anti-androgen is claimed to NOT penetrate the blood/brain barrier (making it LESS likely to cause some of the CNS side effects that  can be encountered with enzalutamide). Sorry, Alan
    • DavidAbrahams
      Kezza, Shocked and saddened to read your latest post this evening. There is not much else I can say without repeating what has already been said. You are undoubtedly an inspiration to all members of this very exclusive "MEN ONLY CLUB". Keep up the good fight and endeavor to continue to enjoy the things in life that brings a smile or laugh. Have you heard of PAL Assist sponsored/ supported by CCQ & PCFA. It is a Palliative Care help program  for individuals and family members. 1800 772 273 . 7am - 7pm You can off course  give me a bell if you want a chat.                                                                                                                                                                                          Good luck and All the Very Best to you and yours.                                                                                                          David 
    • Charles (Chuck) Maack
      In this paper https://tinyurl.com/y4r77bre I address issues regarding “ORCHIECTOMY – A SURGICAL PROCEDURE IN WHICH ONE OR BOTH TESTICLES ARE REMOVED – IS IT SUFFICIENT TO INHIBIT ANDROGEN (TESTOSTERONE) FROM ACCESS TO PROSTATE CANCER CELLS?   And you or your Dad may have been the one in Australia to whom I posted this in the past.  In any case, it is obvious orchiectomy has not provided the reduction in PSA anticipated.  Here are considerations to look into NOW:   -         Testosterone level -         Apparently the antiandrogen Casodex or its generic are not serving to suppress androgen/testosterone from accessing cancer cells -         Prescribing the 5Alpha Reductase inhibitor dutasteride/Avodart may serve to suppress any androgen/testosterone from converting to the more powerful stimulant to prostate cancer cell growth and proliferation,  dihydrotestosterone/DHT (Your Dad’s adrenal glands are still producing androgen/testosterone) -         Your Dad’s dihydrotestosterone/DHT level should be determined and if high, supports the prescribing of dutasteride/Avodart -         Your Dad’s PROLACTIN level should be determined (explained in the above url), and if high, Cabergoline should be prescribed and is important as also explained in the url) -         Imaging should be performed to determine if metastasis has occurred.  If not, then enzalutamide/Xtandi should be considered to replace Casodex or its generic to block androgen/testosterone access to 5Alpha Reductase as well as the multitude of androgen receptors on cancer cells.  Another antiandrogens, if available in Australia, is apalutamide/Erleada.  These are both expensive medications so you want to make certain your Dad’s health insurance will cover its cost. -         If you Dad’s cancer is found to have metastasized, then enzalutamide/Xtandi is still a good initial step, BUT you also then have the option to rather have abiraterone acetate/Zytiga prescribed that is designed to shut down the three manufacturers of testosterone; testicular, adrenal glands, and that which can be produced by cancer cells themselves.  In the U.S., one must have known metastasis before Zytiga is approved for prescribing.  The other medications above do not require metastasis as a prerequisite to prescribing.  Again, abiraterone/Zytiga is an expensive medication so your Dad’s insurance should be checked to make sure would be covered. The foregoing are those steps still available to hopefully reign in and control your Dad’s cancer and preclude moving to chemotherapy wherein docetaxel/Taxotere would likely be the next medication in the journey.
    • Kezza2
      Thanks Alan (and Patrick) for the great advice.  That is the imense value of these forums.  I believe the PA hospital Brisbane) has cyberknife and the latest in stereotactic equipment, and the SMO radonc Margo Lehmann is highly regarded in both the public and private sectors, so I am in good hands.  My other two medoncs are hovering around like mother hens, so if it is fixable they will fix it.  and if not I have had a great life with very few regrets. I will continue to post updates while I am able, and keep fiting the good fight
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